End of Life Planning

As Dr. Atul Gawande writes in his book Being Mortal: Medicine and What Matters in the End, “For human beings, life is meaningful because it is a story…and in stories, endings matter.”1

End of life planning can be difficult for the one dying and for their loved ones. However, by undertaking the steps to plan for what one wants, the person who is dying gets to shape the ending of their story. End of life planning usually includes making decisions on their goals of care, where they want to spend their final days (for example, at home versus in the hospital), which treatments for end of life care they want to receive, and what type of palliative care and/or hospice care they want to receive. End of life care refers to the support and medical care given during the time surrounding death, although it includes more than just the moments before breathing and heartbeat stop and may include days, weeks or months before death. Palliative care provides relief from the symptoms of illness and can be a part of care at any stage of disease. Hospice care includes palliative care and focuses on the quality of life at the end of life.2,3

Components of End of Life Planning

End of life planning encompasses more than just the medical care. In addition to making decisions about health care, end of life planning can include legal and financial decision-making, funeral and memorial planning, and determining what legacy someone wants to leave for others, or how they want to be remembered. By making these decisions ahead of time, the person who is dying can provide helpful information for their families and friends, as well as ensure their individual values are reflected in these decisions.1,3

Advance Directives

Advance directives are written instructions on the type of care that is wanted if someone is critically ill or dying. When someone is too ill or hurt to express their wishes, an advance directive provides a legal document that specifies the person’s wishes. Also called a living will, it often includes instructions on the use of machines that may prolong life (such as dialysis or breathing machines), the use of resuscitation if breathing or heartbeat stops, tube feeding, and/or organ or tissue donation. Another document that can be helpful is a durable power of attorney for health care, which chooses a person to be a health care proxy, another person to make decisions if the patient cannot.2,3

Questions to Consider for End of Life Planning

Conversations about death and dying can be difficult, but understanding the patient’s wishes and priorities allow the patient to have control over choices made at end of life. Some questions that can help shape a discussion include:

  • What is your understanding of the situation and its potential outcomes?
  • What are your biggest fears and concerns? What are your hopes?
  • What goals are most important to you?
  • What trade-offs are you willing to make, and what ones are you not?
  • What is the course of action that best serves this understanding?1

Priorities at End of Life

For those who are sick and nearing the end of life, the priorities go beyond just being safe and living longer. The chance to shape one’s story is essential to sustaining meaning in life.

  • To share memories
  • To pass on wisdoms and keepsakes
  • To settle relationships
  • To establish their legacies
  • To make peace with God (or their personal religious beliefs)
  • To ensure that those they leave behind will be okay 1
Written by: Emily Downward | Last reviewed: January 2017.
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